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Tuesday, April 12, 2011

Mark Blaxill To IACC: "It's Time To Lead"

The IACC is a gov't panel in DC charged with figuring out/solving/funding/researching/leading autism assistance in the USA. To date, they have been relatively useless and some of their members actively FIGHT against what's needed for autism. Like many gov't committees, there's dead weight and people with a personal agenda that is contrary to the greater good, to borrow a phrase. Mark wrote this for an open comment session yesterday. Read it, understand how your tax dollars have failed us all. And that President Obama has been a catastrophe for autism. An utter failure so far.

Time to Lead

My name is Mark Blaxill. I am the father of a 15 year old daughter diagnosed with autism, a Director of SafeMinds and editor-at-large of Age of Autism. I am also a co-author of The Age of Autism: Mercury, Medicine and a Manmade Epidemic. Since our book was published last September I have had the privilege of traveling across the country to meet with dozens of groups and thousands of families affected by autism. I was deeply impressed by the affected individuals, mothers, fathers and family members I met on our tour. Above all else, I was impressed by how so many families have the same story to tell and by how many of us are asking for the same things. We are asking for bold leadership that unfortunately we have not yet seen.

Most directly, in the midst of the greatest childhood epidemic of all of our lives, we are trapped in an historic failure of the scientific process. Thomas Kuhn taught us how communities of “normal scientists” can prevent progress and trap important field of inquiry in scientific orthodoxy. We have seen this pattern play itself out in autism, first in the idea that parents and especially mothers caused autism because they hated, indeed even wanted to murder their children. More recently we have been trapped in the equally failed search for inherited autism genes. In the meantime, we are investing next to nothing in environmental causation. This is a fundamentally irrational approach, yet the orthodox researchers who benefit from this irrationality have defended their territory while they invoke science in the name of their own interests. Not a single dollar spent in the process has prevented a single case of autism. Worse than that, we are spending millions of dollars to promote denial.

In an environment of increasing budget scarcity, this is more than just a scientific failure; it’s an economic one as well. We are wasting taxpayer resources and approaching the governance process with a lack of urgency that seeps into all aspects of autism science. As a near monopsonistic buyer, NIH has a unique power in setting scientific agendas. The IACC should serve the consumers of autism science. Instead you appear to most of us to serve the medical industry, aiding and abetting the fiction that the controversies over autism research pit “parents vs. science.” In reality, that couldn’t be further from the truth. The real controversy is one between critical consumers of autism science and the orthodox producers whose work has failed us. In the debate between the autism community and the medical industry, your responsibility here should be clear.

This is not an abstract problem. Before 1930, the rate of autism was effectively zero. Before 1990, autism in the United States was exceedingly rare, as low as 1 in 10,000. Today, with roughly 1% of children born in the 1990s, it should be breathtakingly clear that autism is manmade. And that makes the autism epidemic not merely a public health crisis but a crisis of public ethics and morality as well. Hundreds of thousands of children, now growing to adulthood, are victims of preventable injury, a form of invisible violence. It is a form of violence that requires witnesses. Yet because of the nature of the injuries involved those witnesses must typically have scientific, medical or technical training. In large part, this witness pool also has career and economic interest in the medical industry, one of the main suspects. Tragically, but perhaps not surprisingly, we are seeing a moral failure of enormous proportions, as potential witnesses are sanctioned, censored and intimidated while the entrenched power of the orthodoxy has successfully sustained its prerogatives. This is not right. More to the point, it is not good. And it is long past time for a change.

More than any other single group of individuals, you members of the IACC are in a position to lead that change. That requires many things of you. It requires you to pay attention. It requires you to think independently and rationally. It requires you to take personal risk. It requires you to challenge close friends and colleagues who are part of the orthodoxy that perpetuates the problem. Above all, it requires moral courage. The only thing it does not require is that you wade through the complex machinations of denial because the problem is simple and staring you in the face. We are staring you in the face. And because autism is what it is, we will be standing in front of you until we are gone, or until you have done the right thing, whichever comes first.

3 comments:

Great post! Sickens me to think of autism being man made, and it CLEARLY is! It is smacking society in the face, and the greed of money is dismissing it! Until pharma no longer controls the medical industry as well as med schools, autism will remain an unsolved "mystery" and continue being the epidemic it currently has become. Whatever happened to the Hippocratic oath? Keep doing what you are doing Kim!

Thank you for what you do and sharing what other parents are doing in this fight.

Knowing how much it costs to treat and provide EI, and long term supportive services (not to mention biomedical for those of us who believe in that route)...that families can't support the financial burden and kiddos/adults end up in/on state & federal programs.

Why is it so hard to get anyone to hear our voices....just asking for unbiased and open minds?

Autism is a hard puzzle and constantly challenging but the government's response is beyond me...